Saturday, August 23, 2014

When Eon was born five years ago, someone said to me of the special needs journey, "The highs are higher and the lows are lower."They were right. I see it in colors. Fuchsia, puce, burnt orange, aqua, sunflower for the highs, and indigo, charcoal, grey, and black for the lows. I wrote of my fears of sending Eon to kindergarten in a recent post. While he's perked up and seemed to be enjoying school more as time went on, I really didn't know for sure how successful he was.Until his teacher called a week ago. She wanted to ask me if I felt ready to send him in underwear starting the following Monday. We'd been working on potty training, but he still needed reminders and had frequent accidents before school started, so we'd been sending him in pull-ups. Mrs. V. assured me he had not had one accident since school started, something we had noticed at home, as well. (He wore underwear all this week, including night time, and had zero accidents. I think he's finally got this!)But she went on to tell me more. "I was just telling our inclusion specialist that I was looking forward to having him in my class this year, but I was concerned with how well he would transition into it. I am so impressed! He has far exceeded my expectations! It's like he's been in my classroom all year." (And yes, they have an inclusion specialist! Who knew?!?)She went on to give an example. Each morning, the students are expected to hang up their backpacks, take out the blue folder and place it on her desk. Then they fill out their lunch menu and put it in the lunch box, get their seat work and begin working. "Eon does that every morning without reminders." Cue the bright colors! I am over the moon! We have seen other positive changes in him since school started, too. (Although, really...is there anything better than fully potty trained?!?) The other day, he came into the kitchen, fixed himself a jelly sandwich, and put everything away when he was done. Well okay, Mr. independent. Help yourself! I've noticed him playing with and interacting with Bo a lot more when he's home, as well. I think he misses him. I'm not sure Bo agrees that attention from Eon is a positive change, but he'll come around. It's been a week since that phone call and I'm still seeing color. He's in the right place. It makes my heart happy.

Monday, August 18, 2014

Dear Bogdan's birthmother,Five years ago today, your dream of motherhood became a reality. I imagine your trek to the hospital. After ten long years of infertility, the wait was finally over and your precious gift would soon arrive. They told me his was a normal delivery. Having delivered seven of my own, I can well imagine your tears of elation and relief as you caressed him and held him to you after that final push. Did you see signs right away? Did they? Were there hushed whispers and knowing looks? Did they whisk your boy away for further observation? Or did you get time with him to bask in the glow of new motherhood before the darkness descended?At some point, you did find out. Down syndrome. That news I don't have to imagine. I've been there. I know the air was sucked from the room in that moment. But the weight of it was heavier for you than it was for me. The only choice that you could see was dark and devastating. And, in contrast to the overwhelmingly long but hopeful road that brought you to motherhood, the trip out of it was abrupt and rife with grief. And so I can't help but think about you on this day, and wonder if I'm loving him well enough for you. As he sits next to me when I write this and pinches me hard, I try to react with grace and remind myself that he's overtired from a full day of school and therapy. I tickle him and he smirks and climbs off the couch. Can I be honest? He wasn't what I was expecting, either.I was expecting Down syndrome. I wanted Down syndrome. I would've welcomed the usual medical conditions that often accompany it. We checked boxes and boxes on the adoption papers of all the things we felt we could handle. So many things we were willing to accept along with a Down syndrome diagnosis.Autism was left unchecked. Autism was something of which I knew so little about...and cared to know even less. It scared the crap out of me and I knew there was no way I could handle that. I was absolutely right. The road to where we are has been rocky, full of potholes and unexpected turns. We didn't know what we were dealing with. I watched other children come home from worse situations and make amazing progress and our boy seemed stuck with no efforts to sign, to speak, to wave bye-bye, even. A year in and he was still drinking from a bottle. It took months of therapy to teach him to look at us and interact beyond a suspicious stare. When behaviors ramped up around the one-year-home mark, I was beside myself with worry and fear, but also beginning to finally accept that God, in His infinite wisdom (and sense of humor) had checked the autism box for us. There were times I worried I'd lose myself in learning to love our boy. While he has a smile that can light up a room, his pinches leave bruises, his bites leave teeth marks, and his incredible aim has left bumps on more than a few noggins. I confess that I don't always react with grace. Frustration and fear have too often colored my response. I sometimes wonder what you would do if you were in my stead. Because I've no doubt that you have wished for a do-over at least a thousand times. Would you do this better than me? I fear you would. As with all my kids, I fail him much. He's learning so much! I wish you could see him now. As I was going to put food on the table for dinner, I felt him brush past me as he raced to his seat, pulled it out, and climbed up in it, always ready for a meal. He's no longer content to sit in the background and play with shoes, but wants to join in, often painfully scratching my feet in his version of tickling, which he finds hilarious. I can't help but laugh, too, because I'm so overjoyed that he wants to be apart of us and is trying so hard to play appropriately! Every once in awhile, for reasons I will never know, he gifts me with the most fabulous spontaneous neck hug. And it sends me to the moon. You see, it was tough going for awhile. But, I love this boy of ours. I accept him fully now, no matter a diagnosis, no matter what's to come. I am blessed and honored to be his mom. Thank you for nurturing him when he was in your womb. Thank you for birthing him well. I hope somehow you can see across the miles that he's good and that he's loved. I hope it eases the hard of this day for you.

And, thankfully, I did lose myself in learning to love him. Pretty sure that's what God had in mind all along. Love,Bo's mom

Saturday, August 9, 2014

What's the expression? It's always darkest before the dawn? I can certainly relate to that saying. My posts have been dark as of late, full of worry tinged with despair, colored with a lot of frustration. I was honest with what was going on with Bo, in our home, and in my heart. It was a difficult time for all of us, much of it based on the reality of daily behavior we felt we couldn't control, but some of the difficulty was based on the fear that we would never learn to control it, to control him. Although Bo is our eighth child, in many ways we feel very much like first time parents. He has issues we've never before encountered, coupled with the fact that we are still, eighteen months in, getting to know this little boy whose first three and a half years of life are virtually a mystery to us. Like a first time parent, my instinct is to react to every negative behavior like this is how it's always going to be. When my current bag of parenting tricks fails to produce results, I'm overcome with despair that we don't know what we're doing. When, in reality, he just may need more time to learn consequences to behavior and we just may need more time to learn antecedents to it. Together, we're figuring it out. He did get an autism evaluation (although it was a terrible excuse for one, in my opinion) from an autism center. In retrospect, seeking an evaluation from a place with little/no experience in Down syndrome was a mistake and he did not receive a diagnosis of ASD. Rather, he was tagged with the cop-out diagnosis of "global delays." Awesome. Immediately following that dismal experience, we had the privilege of attending the National Down Syndrome Congress Convention here in Indianapolis. We took most of the workshops on the ASD tract. I can tell you that every video and description that was shared fit Bo like a glove. We came away absolutely assured that we are not crazy, that we are not alone, and that our son indeed has a co-existing diagnosis of Ds-ASD. And we can do this. Before we even had a chance to implement anything we'd learned, Bo was already making progress. While throwing, spitting, pinching, and biting are still in his repertoire, they are not constant or even anywhere near it, anymore. We are less likely to be dodging flying food during meal times, too. The biggest change I have noticed is on the playground. A few weeks ago, I took these pictures of him experiencing the playground in typical Bo fashion. I missed photographing the end of our time at the park when he was pouring mulch over a lady's foot and trying to remove her shoe. I also neglected to get a picture of him sampling the mulch for taste and texture. Ew.

He could lay in the bubble for HOURS!

He rolls these over and over and OVER.

As soon as KJ came to join him, he scooted out of the way. Soon after, he turned away completely.

Last week, we went to the park and I didn't even have time to take pictures because I was too busy keeping up with him...as he appropriately explored every aspect of it. He climbed the stairs and went down the tunnel slide at least a dozen times. He climbed through tunnels, climbed a ladder (with close supervision), and was aware of other children waiting behind him, once even letting one pass without cuing. When other kids were around, he didn't shut down, but continued playing. He retreated to the mulch only once, but was easily redirected to the sand box. (Where he still sampled it and I tried really hard not to think about it. Ew.)

It was a great day and a HUGE gain for our little guy! We are looking forward to seeing what he'll show us next.

Monday, August 4, 2014

Tomorrow, I put a kindergartner on a bus for the first time. While he is my sixth child, he is my first ever to attend public school. All the rest are homeschooled. Honestly? I am terrified. Not because I am afraid of public school or secular education or socialization or any other such thing home educators are accused of hiding from. But simply because I have no idea if this is the right course of action for my son with special needs. Eon will be fully-included in a general education classroom with only an extra paraprofessional in the class during math and reading instruction. He will receive pull-out instruction in the resource room thirty minutes per day for extra instruction as well as weekly therapies of various lengths. It's what we wanted. It's what his preschool team recommended. According to the research, it's the best-case scenario. But for our family, for our life, for our kid, is it the best option?I honestly have no idea. Will he miss too much family time? Will he feel left out? Are we creating too much distance between him and the neuro-typical kids, therefore highlighting the difference in Down syndrome?Will his teacher get him? Will she embrace having him in her class as she appears to be? Will she support him, yet maintain high expectations, or will she coddle him and treat him like the class mascot? Will he learn academics or just pick up negative behaviors?Will he be safe on the bus? Will bigger kids pick on him? Will he stay in his seat? Will they lose him in transition from busclass as they keep promising me they will not do?->What about lunch? How does a mostly nonverbal kid indicate what he wants for lunch in the cafeteria everyday? How many people know the ASL sign for "french fries"? He will have a guaranteed meltdown if french fries are on the menu, but not on his tray. Should I have shown his teacher the sign at open house?!? Oh, crap! I should have shown her the sign and explained! UGH.And then there's this:

You don't even want to know how long it took me to do this. Seriously. It's embarrassing. If I had to do one for each of my children, I would run away.It took me the entire day to get this one child ready for tomorrow's school day. And then, at the end of it, I failed to do the one thing I've been promising we'd do since his teacher gave it to us at open house.

When I realized I forgot, Eon had been in bed for about a half hour. Shawn reminded me that he's a great sleeper and would go back to sleep readily if I woke him for this sweet ritual. I ran upstairs and approached his bed. "Eon, Eeeeeon....Dude, wake up. Eon? Siiiimeeeeeon." Shaking his leg...his arm...his torso. Lightly at first, then more vigorously. Nothing. I moved on to patting. "Eon! Wake up!" Finally, I pulled him to a sitting position and he opened one eye. I showed him the story and quickly reminded him that his teacher told us to read it. "No! Sleeeeep," he mumbled before collapsing back on the pillow. Undaunted, I began to read:

Once I hit the line about being hard to fall asleep, I looked at my sleeping boy and laughed as I walked out of his room.